Understanding Sexual Help-Seeking for Women With Breast Cancer: What Distinguishes Women Who Seek Help From Those Who Do Not?

Abstract

Background:

Sexual problems are extremely common for women after breast cancer (BC).

Aim:

To determine, in a sample of BC outpatients, how commonly women sought help for sexual concerns, from a health care provider (HCP), from other individuals, or from alternate sources; and to examine whether help-seeking was associated with women’s sexual function/activity, self-efficacy for clinical communication about sexual health, or sociodemographic/medical characteristics.

Methods:

BC patients participating in a sexual/menopausal health communication intervention trial completed web-based baseline self-report surveys. One-way analysis of variances compared effects of the level of sexual help-seeking (none; 1 outlet; 2–3 outlets) on sexual function domains. Chi-square or t-tests compared women seeking help with those not seeking help on other study variables.

Main Outcome Measures:

Patient-reported outcome instruments assessed sexual help-seeking (past month), sexual function and activity (PROMIS Sexual Function and Satisfaction Brief Profile Version 2.0), and self-efficacy (confidence) for communicating with their BC clinician about sexual health.

Results:

144 women (mean age = 56.0 years; 62% partnered; 67% white; 27% black/African American; 4% Hispanic/Latina; 15% stage IV) participated in this study. 49% of women sought help for sexual concerns, most often from intimate partners, family and/or friends (42%), followed by HCPs (24%), or online/print materials (19%); very few women (n = 4; 3%) sought help only from a HCP. Women seeking help were younger and more likely to be partnered and sexually active than those not seeking help. Sexual function was impaired for all domains but was most impaired for sexual interest. Among sexually active women, those seeking help from 2 to 3 sources reported worse sexual function in certain domains (sexual interest, lubrication, vaginal discomfort, vulvar discomfort–labial, satisfaction). Women seeking help from outlets other than HCPs had significantly lower self-efficacy than those who did not.

Clinical Implications:

BC patients with access to a partner and who are sexually active but find sex unsatisfying, uncomfortable, or lack interest may be in particular need of sexual help. Further, women may turn to outlets other than HCPs for sexual help partly because they lack the confidence to do so with a HCP. Sexual health information should be made available to women’s partners, family, and friends, so they may effectively discuss such issues if needed.

Strengths & Limitations:

Strengths of the study included examination of a range of sexual function domains and a theoretical construct in relation to BC patients’ sexual help-seeking and a medically diverse sample. Limitations include a cross-sectional design.

Conclusion:

Women treated for BC should receive accurate and timely sexual health information.

BACKGROUND

The effects of breast cancer surgeries and treatments on women’s sexual function are well established,¹ with at least half of the women treated for breast cancer reporting problems with sexual function at some point in their cancer trajectories.² Examples of common sexual problems include surgical removal of the breasts or nipples reducing or eliminating sensation, leading to reduced sexual arousal; loss of estrogen due to chemotherapy and hormonal therapies causing menopausal symptoms and interfering with lubrication and arousal; and lack of interest in sex due to treatment side effects, the stress of diagnosis, or other factors.^1,3,4 Sexual problems tend to persist over time for breast cancer survivors⁵ and are associated with worse distress and disease interference,⁶ making them critical to address clinically.⁷

Although there’s been an increase in the number of empirically based strategies for addressing sexual function problems,^8,9 only about one-third of women treated for cancer report having discussions about sexual issues with their oncology clinicians.^10,11 Indeed, women diagnosed with cancer are significantly less likely to report having discussions about sexuality in their routine clinical care compared to their male counterparts despite having comparable need for such discussions.^11,12 Moreover, recent evidence suggests that breast cancer survivors often do not raise the topic of sexual health with their breast cancer clinician, even when they are experiencing sexual problems,¹³ suggesting substantial barriers to women in seeking help for breast cancer-related sexual concerns from their clinicians.^14,15 In light of these barriers, it is possible that women may seek help for sexual concerns from clinicians other than those treating their breast cancer or from non-clinicians, including their spouses, partners, family members, or friends.

As efforts to develop such interventions grow and these efforts turn toward improving patients’ communication about sexual health, it becomes increasingly important to understand women’s patterns of seeking help for sexual problems, whether from their clinicians or from other sources. Yet, there are important gaps in this literature that should be addressed. First, worse overall sexual function has been found to be associated with greater sexual help-seeking for women with cancer,^10,12 yet whether impairments in certain domains of sexual function (eg, lubrication, interest) are associated with help-seeking vs others has not been examined. Second, much of the research examining women’s sexual help-seeking after cancer has examined women’s preferences for sexual help-seeking.^16-18 While such information is valuable, which specific outlets women use when seeking such support, and whether women who seek help are distinguished by certain characteristics, such as age, partnered status, or disease stage, has not been examined. Finally, self-efficacy, or confidence, for discussing sexual health with clinicians has been shown to be associated with greater intentions for sexual help-seeking in women with gynecologic cancer.¹⁹ Whether self-efficacy would be associated with greater sexual help-seeking—not just with intentions—has not yet been examined in women with breast cancer. The findings from this investigation could have important implications for identifying the types of support services that should be made available to women and for identifying groups of women most in need of such programs.

Therefore, the objectives for this study were, in a sample of breast cancer outpatients, to (i) characterize the extent to which women sought help for sexual concerns in the prior month from a health care provider (HCP; eg, gynecologist, oncology nurse, internist), someone other than a HCP (eg, spouse/partner, other family member, or friend), or from alternate sources (eg, Internet, print materials, radio, or TV), and (ii) examine how women who sought help differ from those who did not seek help in their sexual function²⁰ or sexual activity status, or in their self-efficacy for discussing sexual health with their clinicians.²¹ We also examined differences between women seeking and not seeking help in sociodemographic or medical characteristics. Guided by the social cognitive framework and relevant empirical literature,^{10,12,19,22,23} we hypothesized that greater sexual help-seeking would be associated with worse sexual function, with greater self-efficacy for discussing sexual health with their breast cancer clinician, and with younger patient age. Hypotheses about specific domains of function or other sociodemographic and medical factors were not made due to the limited background research available to guide such specific hypotheses.

METHODS

Study Design and Setting

The current analyses were conducted using data obtained from the baseline phase of data collection of a randomized controlled trial of a video-based sexual and menopausal health communication intervention for women diagnosed with breast cancer (clinicaltrials.gov entry: NCT03624972). As part of this trial, women completed self-report assessments at baseline (pre-intervention), which occurred immediately after providing consent, at post-intervention, which occurred immediately following an inperson clinic encounter with their breast cancer clinician, and then at 2-month follow-up. The clinic encounters were audio recorded as part of the assessment of the outcomes of the intervention trial. The study setting was a comprehensive cancer center located in an urban setting. Approval was obtained by the appropriate institutional review board (Protocol #14-833).

Recruitment and Consent

Women were identified through searches of clinicians’ clinic schedules and were screened over the phone. All participants provided consent using an online form prior to participation. Paper consent forms and surveys were offered upon request.

Participants

Women were eligible if they were female adults diagnosed with any stage of breast cancer, showed up for follow-up (ie, not consultation visit), and were either receiving treatment for breast cancer or had completed treatment within the past 10 years. Women were ineligible if they were unable to speak English, had poor physical performance (determined through an Eastern Cooperative Oncology Group²⁴ score > 2), or exhibited significant psychiatric or cognitive problems. Patients were compensated with $20 in the form of a gift card for completing the baseline survey.

Data Collection

Patients completed the surveys at 3 time points: baseline (pre-intervention), post-intervention (immediately following a clinic visit with their breast cancer clinician), and at 2-month follow-up. The data presented here are obtained from the baseline questionnaire, prior to the administration of any study intervention. The baseline questionnaire also included data on other aspects of health-related quality of life and communication outcomes not presented here.

Measures

Sociodemographic and Medical Data

Patients completed a sociodemographic survey assessing standard patient social and demographic characteristics (eg, age, marital status, education, race/ethnic status, work status, and sexual orientation). Women were also asked whether they were in a “romantic relationship” separate from their marital status. Women who identified as being in a romantic relationship, regardless of their marital status, were considered partnered for analyses; others were considered unpartnered. Medical data pertaining to patients’ cancer stage and date of diagnosis, menopausal status, and types of treatments received were obtained through chart review.

Sexual Help-Seeking

3 items assessed whether, over the past 30 days, the patient had: (i) discussed sexual concerns with a specific HCP (oncologist, cancer nurse or nurse practitioner, gynecologist, internist/general practitioner, and/or counselor or therapist, or no one [had not discussed]); (ii) discussed sexual concerns with someone other than a HCP (including spouse or partner, friend, sibling, child, other family member, and/or someone else, or no one [had not discussed]), and/or (iii) sought information on sexual concerns from alternate sources (printed material, TV/video, radio, Internet, and/or other sources, or did not seek information). Participants could check off more than 1 option within each of these 3 questions, and the responses were summarized into dichotomous variables (eg, “sought help from HCP vs did not”) to facilitate analyses.

Sexual Function, Activity, and Use of Sexual Aids

The PROMIS Sexual Function and Satisfaction (PROMIS SexFS) Brief Profile Version 2.0 was used to assess sexual function.²⁰ The PROMIS Sexual Function measures were developed through extensive qualitative and quantitative testing and show evidence of adequate validity and reliability.^25,26 The SexFS Brief Profile Version 2.0 generates scores on the following domains of sexual function assessed over the past 30 days for women: sexual interest (2 items), vaginal lubrication (2 items), vaginal discomfort (2 items), vulvar discomfort—clitoral (1 item), vulvar discomfort—labial (1 item), orgasmic function—ability (1 item), orgasmic function—pleasure (1 item), and satisfaction with sex life (2 items). Higher scores for all domains except the discomfort domains signify better function. Scores are transformed to a T-score metric where a score of 50 equates to the mean of the U.S. population of sexually active adults; in general, 1 SD on these domains is 10 points above or below the score of 50. This measure has been used successfully in women with breast cancer, with 1 SD below (or above, for the discomfort domains) being used to indicate sexual dysfunction.⁴ Sexual activity was assessed using the PROMIS sexual activity screener item, which captures whether the patient has had any sexual activity within the past 30 days, including masturbation, oral sex, and sexual intercourse; women endorsing sexual activity on this item are asked to complete all domains of sexual function, whereas women who are not currently sexually active are only asked to complete the sexual interest items. In addition, 3 items from the PROMIS SexFS item bank assessed use of sexual aids, specifically personal lubricants (response options for sexually active women = never; rarely; sometimes; often; always), vaginal moisturizers, (response options = yes/no), or hormones (estrogen, progesterone, testosterone) for sexual activity either as a skin patch, cream, tablet, or ring inserted into the vagina (response options = yes/no), each over the past month. All women approached for the study were asked about sexual problems (ie, problems associated with “reduced sexual enjoyment, interest, or performance”) using an item from the Patient Care Monitor.^6,27,28

Self-Efficacy

2 items assessed patients’ self-efficacy (confidence) for communicating with their breast cancer clinician about sexual issues in terms of either talking (item 1) or asking (item 2) about sexual health. Response options used an 11-point scale (0 = not at all confident to 10 = extremely confident). As a 2-item scale, these items had outstanding reliability (Cronbach’s alpha = 0.98). These items were developed for this study based on the social cognitive model,²¹ guidelines for developing self-efficacy scales,²⁹ and expert review from a transdisciplinary team.

Statistical Methods

The study sample characteristics and rates of sexual help-seeking were analyzed descriptively. Response to the sexual help-seeking items was reclassified in 2 ways. First, sexual help-seeking responses were classified into 3 categories: (i) no sexual help-seeking from any of the 3 outlets (ie, HCP; intimate partner, family, and/or friends; alternate sources); (ii) seeking help from 1 of these outlets, regardless of which one; and (iii) seeking help from 2 or more of these outlets. Then, separate one-way analysis of variances were conducted to compare the effects of the level of sexual help-seeking on each sexual function domain, or Chi-square tests were used to compare the groups on sexual activity status within the past month (sexually active vs not active). The PROMIS SexFS Brief Profile Version 2.0 does not generate a total score, and in the absence of prior research to guide the selection of specific domains for analyses, we elected to conduct analyses on all sexual function domains to determine whether certain domains of sexual function were associated with sexual help-seeking more strongly than others. Differences in sexual interest by the level of help-seeking were observed both within the sexually active subsample, consistent with the other domain scores, and in the overall sample, as data on this domain were also available from women who were not sexually active; we compared sexually active vs not active women on interest using t-tests. Second, sexual help-seeking responses were recoded into a dichotomous variable:no sexual help-seeking vs sexual help-seeking from any outlet in the past month. We used Chi-square or t-tests to compare women reporting sexual help-seeking vs those not on self-efficacy (as a continuous variable), and generated effect sizes by calculating the difference between groups divided by the pooled SD using accepted sizes for effects (small = 0.2; medium = 0.5; large = 0.8).³⁰ Women reporting sexual help-seeking were also compared with those who did not indulge in sexual help-seeking on sociodemographic/medical variables (age, race/ethnicity, educational qualification, disease stage, current treatment status, or mean months since diagnosis) using similar tests. In these analyses, categorical variables (ie, race/ethnicity, relationship status, education, disease stage, and treatment status) were dichotomized to facilitate comparisons. Odds ratios (ORs) were calculated for categorical variables showing significant differences. SAS version 9.4 (SAS Institute, Cary, NC) was used to calculate PROMIS SexFS scores and IBM SPSS statistical software (IBM Corporation, Armonk, NY) was used for the analyses (version 24.0).

RESULTS

Study Sample

Of the 177 women pre-screened for eligibility and approached for participation, 33 declined either by refusing (n = 22) or because they could not be contacted (n = 11), resulting in 146 patients who consented to participate (acceptance rate = 82%). Patients who declined most commonly cited lack of interest (n = 6) or did not want to have their clinic visit audio recorded as part of the trial (n = 6). 2 patients who consented dropped out prior to trial randomization and did not complete the baseline survey, leaving 144 participants in the analytic sample.^*

Participant characteristics, for the full sample, as well as for the subgroups of women who sought help and did not seek help in the past month, are shown in Table 1. Characteristics of the women who sought and did not seek help are described in a later section (see Differences in Groups by Sexual Help-Seeking section). Overall, the patient sample was mostly white (67%), with the remainder (33%) identifying as black/African American, multi-racial, or others. The sample was largely married or partnered and well-educated, heterosexual, and either employed or retired. Most women were post-menopausal (74%) and the same percentage had a diagnosis of early stage (stage I—II) breast cancer; 15% of the sample had metastatic (stage IV) disease. Overall, the sample had an average of 50.12 months’ post-diagnosis. The majority of patients had curative surgery (58% lumpectomy; 38% mastectomy). Of the patients undergoing mastectomy, 84% had breast reconstruction surgery. Most women (74%) had used endocrine therapy, chemotherapy (66%), and/or radiation therapy (64%), and 33% had immunotherapy. Only 5% had been on ovarian suppression. With regard to the current treatment, the majority of the sample (67%) was taking either aromatase inhibitors or tamoxifen, 17% was on chemotherapy, and fewer were currently on immunotherapy, radiation therapy, or ovarian suppression.

Table 1.

Participant characteristics

	Total (N = 144)	Seeking help (N = 70)	Not seeking help (N = 74)
Characteristic	Mean (SD)
Age, years	56.0 (11.0)	52.7 (10.8)	59.1 (10.3)
	n (%)
Race/ethnicity
White/Caucasian	96 (66.7)	52 (74.3)	44 (59.5)
Black/African American	39 (27.1)	13 (18.6)	26 (35.1)
More than 1 race	4 (2.8)	2 (2.9)	2 (2.7)
Other/unknown	5 (3.5)	3 (4.3)	2 (2.7)
Hispanic/Latina	6 (4.2)	6 (8.6)	0 (0)
Marital status*
Married or cohabiting with a partner	89 (61.8)	50 (71.4)	39 (52.7)
Divorced or separated	28 (19.4)	13 (18.6)	15 (20.3)
Widowed	12 (8.3)	2 (2.9)	10 (13.5)
Never married	15 (10.4)	5 (7.1)	10 (13.5)
Education
Some high school	4 (2.8)	1 (1.4)	3 (4.1)
High school or GED	24 (16.7)	12 (17.1)	12 (16.2)
Some college	39 (27.1)	20 (28.6)	19 (25.7)
Completed college/Graduate school	77 (53.4)	37 (52.8)	40 (54.1)
Employment status
Full/part time	79 (54.9)	39 (55.7)	40 (54.1)
Retired	33 (22.9)	11 (15.7)	22 (29.1)
Unemployed/on disability/other	32 (22.2)	20 (28.6)	12 (16.2)
Sexual orientation
Heterosexual or straight	140 (97.2)	68 (97.1)	72 (97.3)
Lesbian or homosexual	3 (2.1)	1 (1.4)	2 (2.7)
Bisexual	1 (0.7)	1 (1.4)	0 (0)
Menopausal status
Pre-menopausal/peri-menopausal	38 (26.4)	23 (32.8)	15 (20.3)
Post-menopausal	106 (73.6)	47 (67.1)	59 (79.7)
Disease stage
Stage I	66 (45.8)	29 (41.4)	37 (50.0)
Stage II	41 (28.5)	21 (30.0)	20 (27.0)
Stage III	16 (11.1)	7 (10.0)	9 (12.2)
Stage IV	21 (14.6)	13 (18.6)	8 (10.8)
Time since diagnosis, months
Mean	50.12	51.17	49.13
SD	54.64	52.44	56.98
Surgery	138 (95.8)	68 (97.1)	70 (94.6)
Breast conserving surgery	83 (57.6)	34 (48.6)	49 (66.2)
Mastectomy with reconstruction	46 (31.9)	29 (41.4)	17 (23.0)
Mastectomy without reconstruction	9 (6.3)	5 (7.1)	4 (5.4)
Chemotherapy	95 (66.0)	52 (74.3)	43 (58.1)
Current	25 (17.4)	15 (21.4)	10 (13.5)
Endocrine therapy	107 (74.3)	51 (72.9)	56 (75.7)
Current tamoxifen	22 (15.3)	11 (15.7)	11 (14.9)
Current aromatase inhibitors	74 (51.4)	36 (51.4)	38 (51.4)
Ovarian suppression	7 (4.9)	6 (8.6)	1 (1.4)
Current	5 (3.5)	4 (5.7)	1 (1.4)
Radiation therapy	92 (63.9)	45 (64.3)	47 (63.5)
Current	3 (2.1)	1 (1.4)	2 (2.7)
Immunotherapy	48 (33.3)	23 (32.9)	25 (33.8)
Current	23 (16.0)	11 (15.7)	12 (16.2)
Use of personal lubricant
Not sexually active	60 (41.7)	17 (24.3)	43 (58.1)
Never	26 (18.1)	12 (17.1)	14 (18.9)
Rarely	10 (6.9)	5 (7.1)	5 (6.8)
Sometimes	17 (11.8)	13 (18.6)	4 (5.4)
Often	7 (4.9)	5 (7.1)	2 (2.7)
Always	24 (16.7)	18 (25.7)	6 (8.1)
Use of vaginal moisturizer (yes)	26 (18.1)	22 (31.4)	4 (5.4)
Use of hormones (yes)	6 (4.2)	4 (5.7)	2 (2.7)

GED = General Educational Development.

^*Of the 97 women who answered “yes” to the item “are you currently in a romantic relationship,” 77 were married (4 married women answered “no” to this item), 8 were living with a significant partner, 5 were divorced, 3 were widowed, and 4 were never married.

With regard to the use of sexual aids, personal lubricants were most common, with one-third of the sample reporting at least occasional use, followed by a vaginal moisturizer, used by nearly one-fifth of the sample. Lesser than 5% of the sample reported the use of any kind of topical hormones.

Sexual Help-Seeking

Overall, nearly half the sample (49%; n = 70) reported seeking help for sexual concerns in the past month, with 35 women (24%) discussing sexual concerns with a HCP, 61 women (42%) discussing sexual concerns with individuals other than HCPs, and 30 women (21%) seeking information from alternate sources. As shown in Figure 1, there was a significant overlap in the types of sexual help-seeking in which women engaged. For instance, women who discussed sexual concerns with a HCP or through alternate sources also tended to discuss sexual concerns with others, such as their intimate partner, friends, and/or family, and 34% of the help-seeking subsample sought help only through discussing sexual concerns with those other than HCPs. By contrast, only 4 women (6% of the help-seeking subsample; 3% of the overall sample) sought help uniquely through discussing sexual concerns with a HCP, and even fewer sought help only through alternate sources (n = 3; 4% of the help-seeking subsample; 2% of the overall sample).

Figure 1.

Types of sexual help-seeking reported by the help-seeking subsample (N = 70). Percentages are out of the subsample of women who sought help in the past month.

Table 2 presents rates of sexual help-seeking across different outlets for the study sample. Women who discussed sexual concerns with a HCP most commonly reported doing so with a gynecologist, followed by an oncologist or cancer nurse/nurse practitioner, counselor, or internist/general practitioner. Women who discussed sexual concerns with individuals other than HCPs most commonly did so with a spouse or partner, followed by a friend, sibling, or other family member. Finally, those who sought help from alternate sources most commonly did so from the Internet, with fewer women using print materials, other sources, such as online support groups, and radio.

Table 2.

Rates and types of sexual help-seeking in the overall study sample (N = 144)

Sexual help-seeking	N (%)
Discussed sexual concerns with a HCP
Have not discussed	109 (75.7)
Discussed	35 (24.3)
Gynecologist	21 (14.6)
Oncologist	9 (6.3)
Cancer nurse/NP	8 (5.6)
Counselor or therapist	8 (5.6)
Internist or general practitioner	4 (2.8)
Discussed sexual concerns with someone other than a HCP
Have not discussed	83 (57.6)
Discussed	61 (42.4)
Spouse or partner	44 (33.3)
Friend	29 (20.1)
Sibling	7 (4.9)
Other family member	5 (3.5)
Sought information from an alternate source about sexual concerns
Have not sought information	114 (79.2)
Sought information	30 (20.8)
Internet	25 (17.4)
Printed materials	10 (6.9)
Other (eg, online support)	3 (2.1)
Radio	1 (0.7)
TV/video	0(0)

HCP = health care provider; NP = nurse practitioner.

Differences in Groups by Sexual Help-Seeking

Sociodemographic and Clinical Characteristics

Sociodemographic and clinical characteristics for women who sought help and did not seek help are shown in Table 1. As shown in the table, women who sought help through any means were significantly younger than those who did not seek help, t (142) = 3.60, P < .001. In addition, a greater percentage of women who sought help self-identified themselves as being in a romantic relationship (ie, were partnered; 58/70; 83%) as compared to those who did not seek help (39/74; 53%), χ² = 5.34, OR = 4.34, P < .001. For partnered women, the rates of sexual help-seeking for HCP, others, and alternate sources were 28.9%, 55.7%, and 26.8%, respectively; for unpartnered women, these rates were 14.9%, 14.9%, and 8.5%. Women seeking help vs those not seeking help did not differ significantly on race/ethnicity (white vs non-white), educational qualification (college degree vs lesser qualification), disease stage (metastatic vs non-metastatic), menopausal status (pre/perimenopausal vs post-menopausal), treatment status (currently on chemotherapy, radiation therapy, or immunotherapy vs not on treatment), or mean months since diagnosis (P values ≥ .06).

Sexual Activity and Help-Seeking

All 144 women completed the sexual interest items, and 143 women completed the sexual activity screener item. Of those who completed the sexual activity screener item, 76 (53%) endorsed at least some sexual activity.^† A significantly greater proportion of women who sought help were sexually active (48/70; 69%) as compared to those who did not seek help (28/73; 38%), χ² (2, N = 143) = 13.10, OR = 3.51, P < .001. Moreover, 40% of sexually active women sought help from 2 to 3 outlets compared to only 13% of non-sexually active women.

Overall Sexual Function

Overall, mean sexual function scores for all domains were low (see Table 3). Impairment was particularly pronounced for interest, lubrication, and vaginal discomfort, with the sample mean interest score falling squarely within the dysfunctional range, and lubrication and vaginal discomfort scores falling close to the dysfunctional range, as higher scores signify worse function in the discomfort domains. Other domain scores were within 1 SD of the normative mean, but were still below the mean for the normative population. Interest was significantly greater in women who identified as sexually active but was still nearly 1 full SD below the normative mean of 50 (N = 76; mean = 40.6; SD = 10.5), compared to those who were not sexually active, whose sexual interest scores were nearly 2 SDs below the normative (N = 67; mean = 31.1; SD = 9.2), t (141) = −5.68, P = < .001.

Table 3.

Sexual function by level of help-seeking among sexually active women

Variable	Total sample	Not seeking help	Sought help from 1 source	Sought help from 2 to 3 sources
Sexual function domain	Mean (SD)	Mean (SD)	Mean (SD)	Mean (SD)
Lubrication*	42.2 (9.0)	44.9 (8.8)b	44.8 (8.8)b	38.1 (8.0)a
Vaginal discomfort*	57.2 (10.9)	54.0 (10.5)b**	53.2 (8.1)b**	62.5 (10.7)a**
Vulvar discomfort–labial*	54.1 (10.1)	52.6 (9.6)	50.5 (7.2)b**	57.7 (11.1)a**
Vulvar discomfort–clitoral†	53.9 (9.7)	53.9 (9.9)	52.5 (8.5)	54.8 (10.5)
Satisfaction‡	46.1 (8.6)	48.7 (8.1)b	47.7 (10.0)	42.7 (7.0)a
Interest§	40.6 (10.5)	43.9 (10.2)b	42.4 (10.4)	36.4 (9.7)a
Orgasmic function–pleasure∥	45.4 (9.8)	46.7 (8.0)	45.9 (10.8)	43.8 (10.6)
Orgasmic function–ability¶	44.1 (9.6)	45.1 (8.3)	46.8 (9.7)	41.4 (10.3)

Higher scores = worse function for vaginal and vulvar discomfort domains; higher scores = better function for all other domains.

^{a, b}Groups denoted by different superscripts alone were significantly different in post-hoc tests at P < .05

^**those denoted also by were significant at P < .01.

^*Overall N = 76 (not seeking help: n = 28; 1 source: n = 18; 2–3 sources: n = 30).

^†Overall N = 74 (not seeking help: n = 26; 1 source: n = 18; 2–3 sources: n = 30).

^‡Overall N = 77 (not seeking help: n = 29; 1 source: n = 18; 2–3 sources: n = 30).

^§Overall N = 76 (not seeking help: n = 28; 1 source: n = 18; 2–3 sources: n = 30).

^∥Overall N = 68 (not seeking help: n = 24; 1 source: n = 18; 2–3 sources: n = 26).

^¶Overall N = 67 (not seeking help: n = 24; 1 source: n = 17; 2–3 sources: n = 26).

Sexual Function and Help-Seeking

Effect of the level of sexual help-seeking was significant for the following domains of sexual function within sexually active women in the sample: interest (P = .02); lubrication (P = .005); vaginal discomfort (P = .002); vulvar discomfort—labial (P = .03); and satisfaction (P = .01). Effects of the level of sexual help-seeking on the other sexual function domains (vulvar discomfort—clitoral, orgasmic function—pleasure, and orgasmic function—ability) were not significant, nor was the effect for interest in the overall sample, which included both sexually active and inactive women (P > .16). Table 3 shows the mean scores on each of the sexual function domains for the groups of patients based on their level of sexual help-seeking. To sum up, sexually active women who sought help from 2 to 3 outlets reported significantly worse sexual function than (i) both the other groups in lubrication and vaginal discomfort, (ii) just the women who did not seek help in satisfaction and interest, and (iii) just the women who sought help from 1 outlet in vulvar discomfort—labial.

Self-Efficacy for Discussing Sexual Health and Help-Seeking

Overall, women in this study reported high self-efficacy for discussing sexual health with their breast cancer clinician (mean = 7.5; SD = 2.5). Women who discussed sexual health with a HCP reported similar self-efficacy (n = 35; mean = 7.2; SD = 2.8) as women who did not (n = 109; mean = 7.6; SD = 2.4), t (142) = 0.89, P = .38, constituting a small effect size (Cohen’s d = 0.17). By contrast, women who discussed sexual health with individuals other than HCPs, including their intimate partner, family, and/or friends, reported significantly lower self-efficacy (n = 61; mean = 6.8; SD = 2.8) than women who did not (n = 83; mean = 8.1; SD = 2.1), t (142) = 3.05, P = .003, constituting a medium effect size (Cohen’s d = 0.52). Similarly, women who sought sexual help from alternate sources reported significantly lower self-efficacy (n = 30; mean = 6.5; SD = 3.0) than women who did not (mean = 7.8; SD = 2.3), t (142) = 2.6, P = .01, constituting a medium effect size (Cohen’s d = 0.54).

DISCUSSION

Despite how common sexual problems are for women with breast cancer, rates and outlets used for sexual help-seeking have not been well delineated. We found that just under half of the sample sought help for sexual concerns from any outlet in the past month, suggesting that a substantial number of women are interested in seeking information or support about sexual issues. Further, when women sought help for sexual concerns, they overwhelmingly did so from loved ones, including their spouses, partners, or family members, as opposed to from HCPs. Given the critical role that intimate partners play in women’s sexual function after breast cancer,³ it is not surprising that women commonly reported discussing sexual concerns with them.³¹ What is more surprising is that many women reported discussing sexual issues with individuals other than their partners, including one-fifth of the sample who reported discussing sexual concerns with a friend; this percentage was similar for women who were intimately partnered (21%) and those who were not partnered (18%; data not shown). The observation that only few women discussed sexual concerns with a HCP is in line with findings from prior research^13,17 and suggests that although women with breast cancer may state a preference to receive information about sexual issues from their health care team, few actively opt to have such discussions with clinicians, due to knowledge or skills deficits, emotional discomfort, or negative beliefs.¹⁴

This study presented novel data on how sexual function across different domains related to sexual help-seeking. Findings indicated that women seeking help from more outlets tended to report worse function in domains of sexual function reflecting either general satisfaction or discomfort in engaging in sexual activity (ie, vaginal and vulvar discomfort and lubrication), suggesting that dysfunction in these domains may serve as drivers of patient help-seeking. In addition, women seeking help from more outlets reported significantly lower sexual interest than those who did not seek help, suggesting that for women who are sexually active, a loss of interest in sex may serve as a driver for help-seeking, while also suggesting that these women may be engaging in sexual activity for reasons other than their own desire for sex. By contrast, in the overall sample, interest in sex did not distinguish women based on their extent of sexual help-seeking, suggesting that decreased interest in sex may not serve as a driver for women who are not sexually active. Taken together, these findings suggest that women who are sexually active but find sex unsatisfying, or uncomfortable, or lack interest for it may be most driven to seek help for sexual concerns, and therefore could be particularly in need of help for sexual problems. However, women seeking help from more sources did not differ on the sexual function domains of clitoral discomfort and orgasmic difficulties. In contrast to women’s vaginal discomfort during sex, for instance, it is possible that problems in these domains may not hinder women’s engagement in sexual activity to the same degree as discomfort during sex or dissatisfaction, or be perceived of as equally distressing as problems in the other domains, and therefore may not similarly serve as drivers of sexual help-seeking. These are speculations, however, and would need to be evaluated in future research.

Although we expected that women seeking help for sexual concerns through their HCP would report greater self-efficacy for sexual health communication, surprisingly, this was not the case. Rather, women seeking and those not seeking sexual help were similar in their endorsement of these beliefs, whereas women who sought help either through individuals other than HCPs, such as their partner, family, or friends, or through alternate sources were characterized by lower self-efficacy relative to the women who did not seek help through these outlets. A key implication of this finding is that women may seek help from outlets other than HCPs partly because they lack the self-efficacy to raise the issue with a HCP; in the absence of sufficient confidence to broach the subject with their clinician, they choose to seek help elsewhere. Further, the effects for these differences were of a medium size, suggesting that they may be clinically relevant. These findings are in line with similar research studies conducted in women with gynecologic cancer¹⁹ and, more recently, in breast cancer.³² Since many patients do not seem to have adequate confidence to raise the topic of sexual concerns with their HCPs, the onus to raise the topic of sexual health should likely be on the clinician. Given that lack of training and discomfort are common reasons why cancer clinicians do not routinely raise the topic of sexual health, clinician-focused communication interventions could serve a critical role in advancing discussions of this topic, and encouragingly, efforts in this vein are growing.^33,34 In addition, interventions that can improve women’s self-efficacy for discussing sexual health may also yield benefit at moving these discussions forward from the patient’s perspective.

We expected that women who sought help for sexual concerns would be younger than those who did not, and the research bore this out. Relative to older women treated for breast cancer, younger women tend to report heightened impact of the cancer on their sexual function^22,35,36 and report greater interest in seeking help for sexual concerns.²³ In the present study, women who were partnered or sexually active had more than 3 times greater odds of seeking help for sexual concerns than women who were not partnered or sexually active, respectively. These findings suggest that interference with the intimate relationship is likely to be a highly important factor underlying women’s sexual help-seeking after breast cancer. Given that women’s partnered relationships play a key role in their experiences of breast cancer-related sexual function³⁷ and can influence their interest in engaging in sexuality interventions,^38,39 such findings are not surprising. However, we also note that a substantial minority of the unpartnered women reported seeking help for sexual concerns in the prior month, suggesting that a considerable number of women not in long-term intimate partnerships are nevertheless interested in receiving help for sexual concerns. Research is warranted to explore in-depth the needs of unpartnered women with respect to sexual help services that would be of greatest use. By contrast, other factors, such as having metastatic disease or having completed treatment, did not distinguish women who sought vs those who did not seek help for sexual concerns, echoing findings of prior research suggesting that sexual concerns are relevant to women with different breast cancer treatment histories and stages of disease.^40,41

Strengths and Limitations

This study had several strengths including the use of a relatively new, valid multidimensional sexual function measure and a theoretical construct in relation to sexual help-seeking, the examination of a range of outlets for sexual help-seeking, and inclusion of understudied groups including unpartnered women and those with metastatic disease. However, there are certain limitations that warrant mention. First, women in the study sample had significantly greater sexual concerns than women who opted not to participate, and had agreed to participate in a trial of an intervention designed to enhance their clinical communication about sexual health after breast cancer. Thus, this sample may be more open to having discussions of sexual health relative to the larger population of breast cancer patients. At 82%, however, the acceptance rate for the trial was very high, casting doubt on the notion for a strong selection bias. Second, communication with HCPs was assessed over the past month, which is a rather limited timeframe. It is possible that women had discussed sexual issues with their HCP at a different time not assessed here or that women may not have had the opportunity to see their clinician during this timeframe. We recommend that longer timeframes be used in future research. The reliability of the responses obtained over a longer timeframe, however, should also be examined. In addition, the study was conducted in a comprehensive cancer center, in which sexual health resources (eg, print educational pamphlets) and clinicians skilled in sexual counseling are available. It is important to assess sexual help-seeking in the context of sites with different types of sexual health care. Third, although one-third of the sample identified as being from a racial minority group, there was less representation from specific racial or ethnic minority groups including Hispanic/Latina and Asian women, among others. Further, only 3 women participated who identified as being from a sexual minority group. Concerted efforts will likely be necessary to recruit the number of women needed to adequately assess whether the patterns found here hold true in diverse groups of women. Finally, the data were cross-sectional in nature, and thus we cannot make assumptions that the sexual function problems, self-efficacy, or sociodemographic factors examined here cause women to seek help. Future studies could examine the motivations behind women’s help-seeking and use longitudinal research to assess whether particular sexual problems, women’s beliefs, or other sociocultural factors lead to help-seeking.

Clinical Implications

Taken together, these findings have implications for clinical practice. First, they suggest that all women should be given information about sexual side effects of treatments and queried as to effects on their sexual function, regardless of age, partnered or sexual activity status, disease stage, or other individual differences, rather than relying on certain subgroups of patients to raise the topic. Indeed, the ability to receive accurate information from the medical team with regard to sexual side effects is especially important in light of the finding that so many women seem to be turning to other important people in their lives for help in this regard who likely lack medical backgrounds in most cases. These findings suggest that sexual health information should be made available not only to patients affected by cancer but also to partners and other loved ones, so that these individuals could provide helpful support if called upon to do so. For instance, informational packets could be designed specifically for women’s partners or other caregivers explaining sexual effects of treatment alongside other effects, and intimate partners could be included in clinical discussions of sexual side effects of treatments as well as in more in-depth interventions.^3,42 Furthermore, findings suggest establishing coordination of sexual health care among women’s gynecologists and oncology care teams given that women seeking help through HCPs were most likely to do so through their gynecologists. We do not know whether the clinical discussions women endorsed in this study occurred during visits made specifically to discuss sexual concerns or were of a routine nature, and this could be clarified in future studies. Finally, they suggest that women may be amenable to using the Internet for sexual health services. Encouragingly, websites offering credible information about sexual health post-breast cancer on the Internet are growing, such as those of the National Cancer Institute, the American Cancer Society, and other organizations including Living Beyond Breast Cancer. Our findings indicate that clinicians’ suggestions to access such resources may be well-received by patients in need of assistance.

CONCLUSION

All women who have been diagnosed with and treated for breast cancer require accurate and timely information about sexual health. Interventions aimed at bringing sexual health into routine clinical discussions for women with breast cancer are currently being developed and evaluated, with some promising efforts underway.^33,34,43 Understanding the factors that are associated with sexual help-seeking in women with breast cancer may serve as an important step in the direction of optimizing care for women with sexual concerns after breast cancer.